May 4, 2010

Liver, its whats for dinner.

**Warning, you'll never look at chicken the same**

How does one explain a rare liver disease or any disease for that matter to a 4 year old?

We have always been very open about what I have been going though with my oldest son. When I got pregnant, we explained that there was a baby growing in mommas tummy and that one day we would go to the hospital and get the baby out. Nothing detailed, but just so that he knew what was going on.

Then when I found out I was sick, I thought maybe it would be to much for his little head(and heart) to deal with. So when I had to start giving myself injections, I would make sure he was occupied and looked after while I ran upstairs locked the bedroom and the bathroom doors, take my meds and hurry back down before he realized I was even gone. And it worked. Until the day I forgot to lock the doors and just as I got the needle in, the door flung open and there stood my horrified child. And there I was, sitting on the edge of the tub, with a needle in my leg and a horrified look on my face too! If you have ever taken Lovenox, you know that it burns. And I'm not talking only when you actually inject it, you can feel the burn the second the needle pierces skin and for mins after you inject. At that point I went ahead and pushed in my meds, withdrew the needle and dumped it in my sharps container. I was in such a rush I forgot to hold the gauze and now had blood dripping down my leg. It felt like time had frozen.

Before I knew it, the little guy was standing at my leg with a tissue, cleaning the blood and telling me that everything was going to be alright. Here I was expecting him to be scared and instead he was nothing but concerned. I should have known, that's just the type of kid he is. But I guess I just wasn't ready for him to know there was something bigger going on. When I apologized for not locking the door, he replied with but I want to help you get better. And that was the start of it. Since that day, there have been many questions asked. Many answers to all the why, what, who and whens. But from that day I told myself that I was going to be as open as possible with my son. I told him if he ever has a question to just ask.

Today as I was chopping chicken breast for dinner he asked me what I'm cutting. My head was pretty foggy, so I was trying to concentrate on cutting. Instead of telling him. I showed him a piece, and right as I was about to cut, he declares "I'm not eating that liver". At first I wasn't sure what he was talking about. But then I remembered that I had joked to my husband about how the drawing of a liver in one of my books looked like a chicken breast. And that started the snow ball of questions.

Q: Why isn't your liver smooth like the chicken?
A: Because my liver is sick.

Q: Well when will it get better?
A: When the Doctors give me a new one.

Q: Is the Doctor going to cook it?
A: No baby. Someone will give me their liver and the Doctors will put it in for me.

Q: Like its your Happy Birthday present?
A: Exactly. Then I can have many more happy birthdays.

Q: Did you take your medicine to keep the X's out. (In one of my book, infection is shown as X's trying to attack the liver.)
A: I don't take them yet, but I will when I get my new liver.

Q: Can we go get it now?
A: Not yet, the Doctors will call me when its my turn.

Q: Will a hug make you feel better?
A: Always :)

There were the easy questions. He once asked me out of the blue If I was going to die. Then cried until I promised I wouldn't. Yes I lied, shoot me. But I didn't know what else to do. We have read all the handbooks I was given at the Transplant Hospital together. He "studies" the pictures and has anatomy down pretty well. He knows that my liver isn't working well and that the bad guys (toxins) get to my brain and make me silly. He might not understand it all, but at least he isn't in the dark either. He knows that most days, I am not feeling good enough to play outside, and he usually doesn't get to upset about it. And when we do get to play, he is always sure to be careful and is always asking me if I feel OK. I think I made the right choice. What would you have done?


  1. I think you are doing the right thing with your 4 year old! I struggled with how to tell Gabriella enough about her condition so she understood without scaring her. The social worked told me the best thing is to vaguely tell her about it and let her ask questions. That she'd stop asking and give you the sign she understands well enough. Of course, thats hard for us now because Gabriella cannot talk to ask me, but I continue on with how it started and give her basic, kid level answers.

  2. Hehehe... Chicken. ours are engines... I couldn't hide when I first started puking... and when the random nose bleeds started, River was the same way, he went to grab me tissue.
    He knows that I will be going to the hospital to get a new one, but the only thing that makes me sad is everytime I have to go in on emergency and then he askes... are you better now? Did you get your new faster engine... can you run now? but he too is understanding when I say "not yet honey" hehe.. boys and their moms. xo